SACRAMENTO – Scott Wiener made an astonishing revelation at a spring hearing in the Legislative Committee: “I was in the hospital. I experienced the strongest abdominal pain I could ever imagine. “
The Democratic senator from the United States recalled crawling up the stairs to his master’s apartment last July to be taken to hospital.
The San Francisco lawmaker also revealed to colleagues on the Senate Health Committee that he has Crohn’s disease, a chronic autoimmune condition that causes inflammation in the digestive tract. His body, he said, did not respond to his medication, leading to abdominal abscesses and a week-long hospital stay.
Wiener is a young, thin 52-year-old known in the Capitol as an energetic workaholic. This is the reputation he has had since his early days as a supervisor in San Francisco.
He is known for his progressive proposals for housing affordability, safe injection sites, mental health and sentence reform. Wiener is also a highly private MP who, by his own admission, is not the type to “personalize these things”.
He opened after some Republican lawmakers and health insurance lobbyists questioned the cost of one of his bills during a committee hearing in April. SB 853 will require state-regulated insurance companies to cover a denied prescription while the patient appeals the decision if the patient has previously taken the drug – even if it is higher than the FDA approved or in a different form than previously prescribed.
The clause on the dosage and form of the drug is especially important for patients who have an autoimmune disease, such as Crohn’s disease, because they sometimes need a higher dose of the drug than recommended by the FDA. Or the drug may work better for them in injectable form than as a pill.
Patients who are denied medication are often left without it while appealing, a process that health plans usually take 30 days. However, some patients say it can take months.
According to his bill, if he ever has to challenge the decisions of his health plan regarding his medicines, Weiner told his colleagues: “I can get the right dose during the appeal, so as not to miss more meetings of the health committee.
But Jed Hampton, director of legislative matters at the California Health Plans Association, said the bill would give patients “unimpeded access to prescription drugs,” which could lead to abuse and addiction. “We are deeply concerned that depriving health plans of the ability to provide clinical surveillance and access to certain drugs could cause potential side effects and real harm to our enrolled,” he said.
The Senate approved Wiener’s 39-0 bill last month. A hearing is expected in the Assembly.
Wiener sat down with KHN senior correspondent Samantha Young to talk about what it’s like to live with Crohn’s disease, his hospital stay, and how the experience informs his work. The interview has been edited for length and clarity.
Question: How does Crohn’s disease affect your life?
I have had it for 33 years and I was lucky that apart from last year, I was just dealing with recurring pain. But last spring I became more symptomatic and was hospitalized overnight in late June with pain. Then a month later, on Tuesday night, going to bed suddenly, the only way to describe it, was like an electric storm in my stomach. The strongest pain I’ve ever had.
The hospital did a scan and found many abscesses in my abdomen. I was in the intensive care unit for three nights and in the hospital for a week. Abscesses had to be drained, and I was on heavy antibiotics. I had a recurrence in September and had to return to the hospital in four days. But now everything has cleared up and I’ve been doing great ever since. I feel lucky.
This has never affected my ability to be a workaholic, my ability to just live my life, to travel, to rest. I feel very privileged. There are other people with other autoimmune diseases and Crohn’s disease who are much more affected.
Question: How do you observe Crohn’s disease?
After I left the hospital, I started a consultation with an infectious disease specialist. I know what to look for, so I hope this never happens again. I know I need to go to the hospital if I have unexplained fever with some pain and my test is negative for covid-19. For many people, if you have unexplained fever for a few days and you just don’t feel well, you let it go. For me, I have to go to the hospital and have a scan done, just to make sure I don’t have an infection.
Question: There are so many chronic health conditions that require special care and medications that can be very expensive. Have you ever had problems getting coverage for them?
I have always taken ordinary generic drugs, but then the two times I had to take special drugs, I had two opposite experiences. The first time my insurance company said I had to try and fail the steroid prednisone first. Well, anyone who knows something about prednisone knows that this is a last resort. Prednisone has so many side effects and can cause many problems in the long run. It was just shocking to me and my doctor that the insurance company said you should try and fail.
Then, when my doctor went to transfer me to what I am currently on, he was approved within 24 hours. It was as easy as it could be. So I experienced an amazing response to the health plan, and also a really challenging response.
Question: What does this tell you as a legislator about the way our health care system works?
Sometimes the system works very well and sometimes it doesn’t. And if you’re not the type of person who can stand up for yourself, or you don’t have your primary care physician who can stand up for you, you can really have a bad result.
Question: What have you and other legislators done to deal with this?
We do a lot of work around health plan accountability. I have another bill, SB 858, which will increase fines for health plan violations. Throughout my experience last year, with various hospitalizations, my health plan was great. Everything was very fast and we always had a nurse who followed me after I left the hospital. But people fall through the cracks – sometimes mistakes are made in refusing to cover.
I have supported and co-authored a number of pieces of legislation to reduce the cost of prescription medicines. I am very lucky to have excellent health insurance, but many people do not. I haven’t had a problem with the co-payment, but there are people who had to pay huge sums just to get medicine, because the coverage doesn’t come in until they pay $ 5,000. This makes me very sensitive to these cost problems. And I was a proud champion and co-author of AB 1400, the sole payer legislation of Assembly member Ash Calra.
Q: Does your personal life affect the accounts you sponsor?
My personal experience certainly influences my outlook on life. My personal experience as a gay man, as a patient and in society as a whole. This is true for every employee you choose, so it’s important to have employees with a lot of life experience, because I think that makes you a better representative.
Question: Your bill has been the subject of difficult questions by some Republican lawmakers, but that has changed since you shared your story. Do you think that personal stories like yours have weight among your colleagues and the public?
Yes. I was really grateful that he received support from both parties. And I don’t think there’s really any reason for him to be a party member on some of these issues.
As elected officials, we are sometimes viewed as caricatures of human beings. We are human beings who experience the same challenges as other people – challenges in parenting or with a sick family member. We had members who had to deal with difficult family or health situations. I think it’s good for the public to know that.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and surveys, KHN is one of the three main operational programs of KFF (Family Foundation Kaiser). KFF is a gifted non-profit organization that provides information on the nation’s health issues.
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